Stephen Drake and Not Dead Yet: Alive and Kicking

by Lori A. Wood

This is Part II of a two-part series on the ethics of euthanasia. The views expressed in this article are not necessarily those of United Spinal or its employees. This article, as well as last month’s article on Princeton philosophy professor Peter Singer, is intended to provoke thought and discussion. We welcome your response to this series. Please send written responses—no phone calls, please—to United Spinal Orbit, 75-20 Astoria Boulevard, Jackson Heights, NY 11370-1199, or send it by e-mail to orbit@unitedspinal.org.

In 1993, Canadian Robert Latimer put his 12-year-old daughter Tracy in the cab of his truck, pumped exhaust into the cab, and waited for her to die. Tracy had severe cerebral palsy and Latimer claimed he couldn’t bear to watch her suffer. The next year, Latimer was convicted of second- degree murder. The alleged mercy killing made him a hero to Canadian pro-euthanasia groups.

The case caught the attention of Stephen Drake, a disability rights activist who would go on to become research analyst for the Chicago, Illinois-based group, Not Dead Yet, which has become famous—or notorious— for opposing euthanasia for people with disabilities.

“They adopted Robert Latimer as a poster child for their cause,” Drake recalls.

Around the same time, Drake also read Prescription: Medicide, by Dr. Jack Kevorkian, who had been helping those with disabilities commit suicide. “It’s fair to start judging a movement by its heroes. Jack Kevorkian is the euthanasia movement’s foremost hero and he bears close inspection. Turns out that assisted suicide [is] not the guy’s real passion; it’s human experimentation,” Drake says. “He was working on that kind of advocacy since the fifties. He started out wanting to have it so that condemned prisoners could volunteer to be put to death through general anesthesia, as long as they agreed to be kept alive but unconscious for days or weeks, while experiments were done on them.”

According to Kevorkian’s remarks, taken from a 1988 article, The Last Fearsome Taboo: Medical Aspects of Planned Death, available at web.syr.edu/~sndrake/kevorkian.htm, once consent from the parents has been obtained, a full-term infant with spina bifida, paraplegia, and hydrocephalus could have research conducted upon him or her that was “hitherto conducted [only] in rats.”

Stephen Drake is a research analyst for the disability group Not Dead Yet, which opposes assisted suicide for people with disabilities. Be that as it may, Not Dead Yet focuses more on opposing assisted suicide and euthanasia. “We have people organize when there’s need to organize; it’s grassroots,” Drake explains. “We’ve had people participate in Not Dead Yet activities in at least twenty, maybe thirty, different states.”

The group’s mission, while first focusing on opposing the legalization of assisted suicide and euthanasia, has expanded over time to include opposition to the legalization of any form of medical killing. “We look at the discriminatory impact of empowering a professional to legally commit a murder or aid a suicide,” Drake says. “We don’t say that we’re necessarily making judgments about suicide, in general. What we’re against is a two-tiered policy toward suicide, that for old, ill and disabled people, you take one approach, and for everyone else, you take another.”

Just as people with disabilities demand equality in life, Not Dead Yet would like to see their deaths afforded the same courtesy. “We’re also active in making sure that the murders of people with disabilities get treated as seriously as the domestic homicides of nondisabled people, especially children. There have been a couple of studies that say that parents who kill their kids, if they’re disabled, get much more generous treatment by the courts [than those of nondisabled children].

“Already, we have enough people telling us that, if you’re disabled, your friends and family can have a different reaction than other people get when they say, ‘My life is not worth living,’” Drake continues. “When they are looking to be talked out of it, what they hear is, ‘I understand why you’d want to do that.’ One of the things the end of life movement has done is to sell the idea that the value of life is tied to some idea of quality of life, and that it almost can be quantified and objectified on a chart.”

What does this say about the way society views disability? Is this because, as John Locke’s notion of personhood suggests, a being is only considered a person if they are self-aware? Bioethics professors, such as Princeton’s Peter Singer, may adopt Locke’s philosophy on the matter, but Not Dead Yet thoroughly rejects such an idea. “Personhood is his [Singer's] and other ethicists’ attempt to carve out a bunch of citizens of the United States and deprive them of standing under the Constitution,” Drake claims. “It’s being a person that gives you standing under the Constitution. This isn’t a question of philosophy or ethics. It’s a question of law. This isn’t the first time we’ve deprived segments of the population the full status of personhood; slaves weren’t counted as persons. The way we tend to think of Singer is, he’s the ugly tip of a very large, and just as ugly, iceberg. He’s out there, and he draws the most attention, but there’s a huge bioethics community that isn’t that far from agreeing with everything he says.”

When Singer was hired by Princeton in 1999, Not Dead Yet was present to speak out against the decision. “Our protest was really against the university,” Drake explains. “The university was doing its best to play that down and the press pretty much ignored it. At the time, Princeton had a hate speech policy, which included disability. Our demands were that they should enforce the policy when it came to Peter Singer or throw the policy out entirely.”

The activists sought to make the point that Princeton wouldn’t have gone out of its way to hire somebody who had analogous views on homosexuality or women. “If they cared half as much about disability as they do about gender and sexual orientation, they never would have hired him at all,” Drake maintains. “Up to that point, Singer had been trying to tell any reporter who would listen that the only people who objected to his appointment were pro-lifers [in the abortion controversy]. That protest was so clearly dominated by people with disabilities that he could no longer claim that assertion. He knows that this isn’t true.”

Not Dead Yet has also worked hard to combat the classification of disability as a terminal condition, an idea proposed by many right-to-die groups. “We’ve done several things. One is to raise awareness in our own community. When Last Acts, a huge funded project by the Robert Wood Johnson Foundation, launched a Web page that equated disability with terminality, we enlisted over forty national disability groups, objecting to the way that they had blurred the line,” Drake states.

In 2003, Not Dead Yet, in conjunction with several other disability rights groups, wrote a letter protesting this contention. The letter is available online at www.notdeadyet.org/docs/lastacts.html.

The terminology associated with the right-to-die movement, including phrases like “lifelimiting” and “terminal,” are bound to have an influence on public perception of the issue, Drake maintains. “It plays a big role,” he says. “The closer the public perceives somebody to death, the more sympathetic they are to the idea of assisted suicide and euthanasia. That’s one reason Kevorkian’s gotten such big support. The public, because of really lousy work in the press, believes that most of the people who went to Kevorkian were terminally ill.”

Drake holds Peter Singer partially responsible for perpetuating this misconception. “Two years ago, Peter Singer was on a radio show with me and tried to say that. Singer doesn’t do his homework, either. He’s very sloppy when it comes to euthanasia. He’s out there saying that all these terminally ill people went to Kevorkian; he hadn’t even bothered to look at the individual cases. If he had, he never would have said that,” Drake says. “There were two published studies and a newspaper series by the Detroit Free Press, documenting that the majority of people who went to Kevorkian weren’t terminally ill. In the first few years of his work . . . they were people with disabilities, for the most part. This guy [Singer] is a Princeton professor; he has the resources to verify the facts and the only reason he doesn’t is, [that] he doesn’t think it’s important enough. It’s just sloppiness.”

Peter Singer was offered a chance to respond to Stephen Drake’s criticisms. He declined the offer.

Lori A. Wood is a frequent contributor to Orbit.